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Tuesday

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Everything posted by Tuesday

  1. Coffee, meds, and water or gatorade/powerade. Breakfast is almost always a bad idea, too.
  2. Do you guys take Effexor, or any other SSRIs? I used to get this exact feeling when I was a little late taking a dose, like my brain was moving around separately, waiting to catch up with my body.
  3. I've been going to the gym and trying to run more, but it's always so hard to keep hydrated and not wind up completely wiped out. A friend gave me some of the Clif shot bloks to try, and I really like them. Wanted to share the info here since they are organic, and really help replenish electrolytes. There's one flavor that has 3x sodium, which might also help us potsies! http://www.clifbar.com/food/products_shot_bloks/ I was able to find them at my local health food store, but they also sell them on Amazon. I keep a few in my purse and they really help when I'm feeling depleted.
  4. As others have said, it really depends on the day. On a good day, I'm pretty much perfectly normal. I can go running for miles, work, shop, play, socialize. But then out of the blue, I'll have a bad day where I literally can't get up out of bed. I think the real question here is how many good days vs. bad days do each of us have. Right now I'm blessed to have far more good days then bad.
  5. I went to San Francisco on business a couple of weeks ago, and while I was there I had no trouble going up and down the steep hills. I climbed Telegraph Hill and Lombard Street, while some of my coworkers had trouble with them. A couple of days later, I almost fainted after just walking a block to my office and going up the elevator and to the conference room! It's never seemed to make a lot of sense to me what will trigger my pre-syncope and what doesn't. I can never figure out a pattern of what makes me dizzy and what doesn't. So, since there's nothing specific that I can avoid, I just do as much as I can.
  6. Midodrine is pretty fast acting, and has a very short effective period. You will know within about 20 minutes whether it's helping, and the dose should wear off in about 3-4 hours. One of the most often-cited side effects is a tingling or shivering sensation on the scalp. If you've ever had a reaction to wasabi or horseradish that made your scalp tingle, it's the same feeling. I would give it a shot, there's very little to lose in trying midodrine if it has already been prescribed for you. If you find the effects are not tolerable, at least you will only have to deal with them for a couple of hours. Personally, midodrine has helped me a great deal, and my biggest complaint is that it does not last longer.
  7. Yup, I play roller derby, and I think the training/skating is pretty similar to hockey. I think being able to play has definitely made my doctors a little more skeptical about my other symptoms, but I totally understand where you are coming from. We practice inside, take breaks for water every half hour, and for whatever reason I don't have any issues skating for hours on end. But get me outside walking to my car across the parking lot in a Florida summer? I'm done. I'm tired ALL. THE. TIME. Even when I'm skating. So it's not a big stretch for me to do something exhausting like skating or going to the gym, since I'm going to feel like crap no matter what I do, but some days it is absolutely ridiculously impossible to get myself to exercise. I have no idea how to explain to doctors why I can do something that requires so much exertion, yet I have difficulty walking around a store for more than 10 minutes. If anyone ever figures this out, I will buy you a case of gatorade.
  8. Thanks, everyone. I haven't really experienced normal or high bp enough to realize that dizziness might be a problem with that, too. I also think it may have something to do with allergies. I took an allergy pill the other day and that seemed to help (although it might just be wishful thinking!) Sounds like I need to check back with my cardio/ep, but do any of you take midodrine even after your bp has stabilized?
  9. I'm just curious to see if anyone can provide an explanation. I've been doing much better with my BP lately, and it's been pretty normal even without my midodrine or fludrocortisone (I went off them a few months ago when my BP started to stabilize). However, recently I'm having spells where I am fatigued and dizzy, like I used to be when my BP got really low. Any idea what else could cause that?
  10. Yes, I pretty much get only the aura with no headache. I get the vision loss/scintillating scotoma that begins as a small spot and then grows to more of my field of sight. It lasts about half an hour to an hour, then goes away. I don't usually get a headache after. When I was on the pill, I got one or two every month. I have fewer episodes now that I am off the pill, but it still happens a few times a year. It's not as scary now that I know what it is.
  11. I took it for a few months, and it helped but eventually I started getting bad headaches. I also gained weight, and my blood pressure went up. I stopped taking it almost a year ago, and my blood pressure is still up.
  12. I've been down lately because over the winter I had almost convinced myself I was normal and healthy, for awhile. My blood pressure was up, no more dizzy spells, and I had gained some weight so I stopped taking my midodrine and fludrocortisone. Stopped the salt tabs and constant water intake. It was like I was living in a dream. I felt well, energetic, healthy even. I almost convinced myself that all of the illness I'd been through before was just in my head. That if I kept up a positive attitude, ate right, exercised, I'd be healthy. Now summer is approaching and I feel like I've fallen flat on my face again. Tired, dizzy, migraines. Feeling like crud all the time. In addition to being physically down, I feel so disappointed in the unpredictability of my health. Sometimes I just wish I felt bad all the time, and didn't have to cope with being teased with days where I felt normal again.
  13. Instead of coffee or tea in the morning or afternoon, I will sometimes heat up a cup of chicken broth or soup. Not too bad.
  14. Neurocardiogenic Syncope just means that your body does not react properly to gravity. Blood vessels dilate when they should constrict, so blood doesn't get pumped back up to the brain the way it should and BP goes down instead of up. Neurocardiogenic means it is not caused by problems with your heart or blood vessels, but the wrong signals being sent to them by your nervous system. Lots of healthy people experience vasovagal syncope under certain conditions - stress, heat, fatigue, etc. but people with NCS can experience it without any of the usual triggers.
  15. I've had sternum pain for about 6 months now, and I'm pretty sure it's costochondritis. It started with a feeling like I need to pop my sternum, but it just would never go. After doing yard work the other weekend it got a lot worse, and now it's tender to the touch and hurts a lot when I twist or put my arms over my head. I'm pretty sure I have EDS too, so I've been reading up on some of the EDS forums about it and it's pretty common with that. Everything I've read is advising NSAIDs, heating pads, and muscle relaxers to help.
  16. I've got a bunch. There are two really large ones that kind of sit right in the middle of my field of vision, and those bother me the most. I've also got constant visual snow (kind of a constant moving static). The visual snow is the most annoying to me because it creates the illusion of movement. I wind up swatting away gnats that really aren't even there, and then people think I'm crazy! Both of these really only started a few years ago when I was around 28, and seem to have been getting worse. And, from reading here for many years it seems it's fairly normal for us to get it. I don't know if there's anything you can do about them
  17. The past few years have been a roller coaster for me. I've gone from being mildly affected, to being severely affected (to the point I was afraid of losing my job) to being almost completely well again. Last summer I was at my worst. I was dizzy nearly every day for several months, my HR and BP were all over the place, and I was taking 15 pills a day just to manage to haul myself into work for a few hours every day. Somehow, over the winter it got better. Now, I am to the point where I don't take my midodrine or florinef at all, and I am going to the gym almost every day and participating in sports like I used to. I transitioned to a standing desk at work (!!!) and almost never have to think about my heart or bp. I don't know that I would say I'm in remission, but I'm as close as I can imagine to being there. I do realize that tomorrow could change everything, so I definitely appreciate this point while I can.
  18. I'm not surprised to hear that many of us would have it Good to know the meds are helping! She recommended a prescription once-a-week supplement rather than doing the OTC daily ones so I will give that a shot.
  19. I couldn't search for "vitamin D" since it's not at least three letters, but I wanted to see if anyone else has this? I went in a week ago to get my thyroid checked again and they told me my vitamin D was extremely low. I'm getting a prescription for a weekly supplement, but they weren't able to tell me a cause. I live in Florida, get plenty of sunlight, eat lots of fish and eggs, so I don't think diet or sun exposure is the problem.
  20. I have persistent visual snow. It's always there. I really don't know what causes it though. I also have really bad floaters.
  21. No, it does not fluctuate. I am pretty much always low. However, after receiving IV fluids in the emergency room I could tell a huge difference - I felt normal for the first time ever. Now, I am on Florinef and it helps a great deal. I have been able to cut down on my midodrine since going on florinef because the increase in blood volume helps regulate my blood pressure, too.
  22. My resting hr is usually around 45, but when I stand up and walk around it can shoot up to 120-140's.
  23. I can tell based on how I feel. When I am low, I feel sluggish, my mouth is dry, I get many more palpitations, heart races, headaches, weakness, and dizziness. I tend to look a lot paler and get cold a lot more easily, too. It wasn't until I knew what it felt like to be full that I knew what to look for.
  24. My doctor usually tells me to try something for a month before deciding it's not working. I couldn't tolerate a beta blocker, either.
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